September 20, 2006
TO: Office of the Clerk of Committees,
Legislative Assembly of British Columbia
BC FamilyNet Society Submission to the
Select Standing Committee on Finance and Government Services
About us: BC FamilyNet is an independent provincial network of families and self-advocates formed over 10 years ago to protect and enhance Community Living supports and services. As an all-volunteer society, we promote the well being of children and youths with special needs, adults with developmental disabilities and their families, through successful community inclusion and greater public understanding of their contributions as valuable citizens.
BC FamilyNet was born in a time of great change, and provided an important channel for families to come together and help other partners resolve major challenges linked to deinstitutionalization. In recent years, we’ve again faced major challenges, with budget cuts and devolution. We have again worked extensively to resolve these with the Minister for Children and Families, Ministry staff, the new Community Living authority (CLBC), families and others.
Background: Simplistically, we have two basic kinds of community living services: 1) Residential supports & services for individuals and 2) Services that help families support a loved one at home. (E.g. group homes, day programs, respite, therapy for children with special needs and crisis services.
Between 2003 and 2005, MCFD’s community living budget was cut by $150 million. This deepened the major funding challenges already facing this sector. We watched services eroded and waitlists mounting as needs continued to expand each year. BC FamilyNet spoke to you last year and we’re grateful that you heard us. February’s modest budget increases were most welcome, but have not averted a mounting crisis.
Community Living costs BC taxpayers about $500 million annually. Much goes to agencies who deliver services locally, and some agencies supplement this with their own fundraising. But ever since we closed the institutions, families have provided the overwhelming bulk of community living supports.
Current prevalence rates indicate BC has over 90,000 school-aged children with special needs. As many as 50,000 adults meet CLBC’s narrow eligibility criteria of developmental disability. Of these, CLBC serves just 10,000 adults and 7,000 kids—a small fraction of the actual population that needs support.
A little help, Please: Almost one in three school-age children with developmental or behavioral disorders may be unidentified as having special needs in our public schools. They are awaiting assessment or coping unaided. Those who can pay are increasingly in private schools, and others are too often at home because schools can’t cope. Less than 1 in 12 kids with special needs receives any services from CLBC and about 1 in 160 are in residential care. So very few families get any support outside of school, as they struggle to raise children with special needs. One exception is the Autism program, which helps children like mine, but often it’s not near enough. Thousands of children are not getting special education or early intervention services and supports that will make or break their success in adulthood.
These supports make a difference. They helped my family through a major crisis six years ago. Our son is now 13 and a poster child for the cost-benefits of early intervention. I’ve had to fight each year for special ed services but we now hope he’ll go to college and support himself in adulthood if all goes well.
The Black Hole: And we certainly pray that all goes well, because he’s among the 9 out of 10 kids with special needs who won’t be eligible for community living once he turns 19 and leaves school because his IQ is over 70. This is what families call The Black Hole. Restructuring was supposed to end this but it’s getting worse, not better. Like the Victoria Mom who recently went to court when CLBC turned away her adult son, even though all the experts agreed his needs were urgent. We hear from many others in such dire straits, and things are about to get a lot worse.
The upsurge in Autism cases means a whole wave of such teens are heading straight for the same black hole, and with no hope of a helping hand. CLBC can’t even serve the young people turning 19 who do meet their strict criteria—over a thousand of them are now waiting for help. They join thousands more adults, some of whom have been waiting for many years, on CLBC’s waitlists. And they will all have to wait until someone decides to increase the budget for community living. It’s only September but CLBC has already spent or committed the entire year’s budget in many regions. In Vancouver, for example, there is no longer even money left to respond to crisis needs. We are hearing from desperate, outraged parents who have met all the criteria, who have prepared a detailed plan as required in CLBC’s new service model, and who are still being denied urgently needed services because there is simply no money.
As many as 4 out of every 5 adults who do meet CLBC’s strict criteria of IQ <70 get no family supports and no services of any kind from CLBC. Only about 1 in 20 eligible adults is currently in a CLBC-funded group home. As waitlists continue to grow, CLBC is trying to close group homes to cut costs. So even for our most severely challenged adults, families provide most of the needed support, in most cases with no help at all from CLBC.
Fading Vision: We expect children to live at home wherever possible. But community living recognizes a shared societal responsibility to support people with developmental disabilities once they reach adulthood, rather than living with parents or in institutions. Since closing the institutions, however, we’ve failed to fund this vision of community living. We’ve been constantly restructuring to find ever-cheaper, ever more innovative and more informal (and often riskier) alternatives, but CLBC can still only meet a fraction of the need. By default, we’re forcing families to assume a lifelong burden of support for adults and raising chances of serious harm, death and/or abandonment when they can’t cope.
We stress that wherever they can, most families choose to continue a primary role in supporting adult relatives. The new $30 million family independence fund will help some, but it targets such a narrow range of needs, like home renovations, that it won’t dent the broader problem. CLBC can’t even provide the basics like respite, day programs and crisis services to support these families, and many are being driven to the brink and beyond.
Costly Savings: Meanwhile, the lack of residential capacity to accommodate adults who need 24-hour care or supervision places them and their families in crisis and poses enormous risks. Here’s another parent’s entirely preventable personal tragedy. As she notes, we don’t save money when we shift the burden to costlier health and justice crisis services:
“As a parent of a 20 year old who has an IQ of 78 and a diagnosis of Autism I have been writing, phoning and e-mailing all who I can about our desperate situation…He has hit his parents, carried weapons, called the Police without good reason and is using lots of emergency resources when they are needed elsewhere…We have psychologists, doctors and behaviour consultants all stating…he needs support to live in the community. If they are the experts why is CLBC not listening…I cannot even begin to tell you how the inaction of all the social services to help has affected our family - we are prisoners in our own home... people like our son could contribute to society if they received help and without it, it will cost the taxpayer in jails, victim services etc.”
Aging parents: A looming crisis also faces many aging parents who have devoted a lifetime to supporting disabled sons and daughters, and who can no longer manage. As a young parent, my first fear on learning that my son was autistic was “What will happen to him when I’m gone?” I now know this is the great fear that haunts us all. It’s especially chilling in these uncertain times of cuts and constant restructuring, and the past five years have placed unbearable stress on many older parents.
Restructuring: Finally, there’s the enormous strain on the system itself from drawn-out, sweeping, and problem-plagued restructuring. After five years of cuts and turmoil, we’re facing considerable challenges as CLBC tries to implement its new service model. Families have run out of patience and urgent intervention is needed to restore trust, stability and avert a major public crisis of confidence.
Conclusion
Families care. We’re doing what’s humanly possible to support community living because no one can ever love our children as much as we do. We’ve all been pushed past the breaking point and then kept going, because we had no choice. We never wanted to be a burden on society and we’re proud to provide the brunt of community living. But even Super-Moms and Super-Dads have limits. CLBC must be there for us and our loved ones when we can’t do more. And that can’t happen until we start funding it.
We also continue to hear horrifying reports of abuse, neglect and death in the funded system, but without formal reporting systems, it’s hard to quantify how extensive this is. The ongoing transition, huge fiscal challenges and CLBC’s shift away from case management, licensed care models and formal monitoring heighten concern over the potential for abuse and neglect. Ultimately, these failures don’t save tax dollars either. The costs of broken people and broken homes and the lost contributions of parents and individuals ripple through other institutions, our society and our economy.
British Columbians are caring people. On the rare occasions these private tragedies make the news, we see our friends and neighbours react with horror. We know our fellow citizens and your constituents would agree that families deserve better and that our children, youth and adults deserve better. We urge a major funding increase for community living, beyond that already committed, and we know BC taxpayers will agree that we can afford it—indeed, that we can’t afford not to do it.
Recommendations:
> Adequate funding, now and on an ongoing basis, to:
- Address waitlists for services & supports (CLBC alone needs $58 million more annually)
- Children and youth with special needs: e.g., early intervention and school-based therapies, Supported Child Care, family respite, crisis intervention, etc;
- Special Education: assessments, training, specialists to coach/support classroom teachers, etc.
- Black hole” re adult services for youths transitioning into adulthood;
- Expand capacity in a range of funded residential options for adults, including licensed staffed group homes, individual funding and crisis care, to ensure placements appropriate to needs.
- Expand family supports: respite, day programs, crisis intervention, etc
> Fund community/family supports to promote safe and, wherever possible, independent living
for adults with IQ over 70 but with serious intellectual, social and/or adaptive challenges, who cannot live alone and unsupported without significant risks.> More subsidized social housing for adults with mild/moderate challenges who can live
independently. > Address quality concerns:
- Strengthen independent provincial monitoring/reporting mechanisms to protect safety and quality of life for adults living at home or in CLBC-funded residential placements.
- Higher pay scales to attract/retain qualified staff, especially for non-union settings.
- Restore funding cut from care providers, which eroded quality of care & quality of life.
- Provide real choices for families and individuals
- Provide urgent intervention to resolve problems in the implementation of CLBC’s new service model and restore stability after 4 years of turmoil
> Case management/coordination: more funding for mental health and coordinated case
management for individuals with severe, multiple challenges, especially those with nofamilies/support networks> Cover costs of non-prescription medications required over the long-term. This was formerly
covered and is not affordable to individuals with very limited incomes. Respectfully submitted,
Dawn Steele and Karen Philipchuk
On behalf of the Board of Directors of BC FamilyNet Society
C/o 954 Wentworth Avenue, North Vancouver, B.C., V7R 1R7. Telephone: 604-988-6966
References
1. Journal of American Physicians and Surgeons Volume 11 Number 1 Spring 2006
“In 2004, the Department of Health and Human Services and the American Academy of Pediatrics (AAP) issued an Autism A.L.A.R.M., stating that 1 in 166 children currently have an autistic disorder, and 1 in 6 children have a developmental and/or behavioral disorder. Autism, once rare, is now more prevalent than childhood cancer, diabetes, and Down syndrome. Epidemic trends in neurodevelopmental disorders (NDs) were first observed in the United States during the 1990s, and cannot be explained by immigration, changed diagnostic criteria, or improved identification….”
2. BC Ministry of Education Student Statistics 2001/02 – 2005-06
2005-06 school-age students in public schools: 582,088
2005-06 public school students with special needs: 61,277
Ratio of identified students with all special needs: about 1 in 10
(Estimated actual number based on incidence of 1 in 6 children with developmental/behavioral disorder: 97,000)
3. Encyclopedia of Mental Disorders
“Mental retardation is defined as an IQ score below 70–75…”
“The prevalence of mental retardation in North America is a subject of heated debate. It is thought to be between 1%–3% depending upon the population, methods of assessment, and criteria of assessment that are used.”
(Estimated number of adults with IQ<70 based on 3.3 million adult population & 1.5% incidence rate: 49,500)
4. CLBC Service Plan 200607 – 2008/09
“As of October 31, 2005 CLBC had open files for 9,813 adults…”
“In 2004/2005 [based on MCFD data] 7,839 families received a range of community living supports and services for children with special needs, including those with a developmental disability. Of this figure, 514 children received residential services through MCFD Community Living Services….”
